Sunday, January 18, 2009

The Year of Biomedical Intervention

We have arrived.

It's been three plus years of therapies. ABA, PT, OT, Speech, and Oral Motor.

Three plus years of waiting for that breakthrough. That "something". That moment when I know everything is going to be alright.

Three plus years.

My husband and I have talked about biomedical intervention in the past. We don't know where to turn for guidance. We don't know which experts to believe. When I say experts, I am not talking about doctors because so far, they have failed David miserably.

We did take David to three doctors last Tuesday. A gastroenterologist who is based at the Autism Center of New Jersey. A Neurologist who is on one of those "Top 100" list and his Pediatrician for his state mandated flu shot-don't get started.

Too late! That @#$@# flu shot made David sicker than a dog. Fever of 104 for two days complete with vomiting, runny nose, cough, COME ON!!!

Sorry, I digress.

The neurologist diagnosed David with ADHD. He prescribed a Ritalin patch. My husband and I were all set to try it. Until I started reading a book called The Hyperactivity Hoax. How to Stop Drugging Your Child and Find Real Medical Help. By Sydney Walker III, MD.

I haven't finished reading the book yet, but in a nutshell, Dr. Walker's thesis is that ADD/ADHD do not exist on their own, meaning there is an underlying problem that causes the ADD/ADHD symptoms. Diet is the main cause. Not the only one, but one worthy of discussion and thought.

The gastroenterologist that David saw ordered blood work and stool testing to check for food allergies/intolerances and bowel disorders. She suggested that we try the GFCF diet because in her research it has been shown that many kids on the spectrum do in fact have trouble with gluten and casein even though allergy testing is negative. It can't hurt to do the diet and we feel better prepared to initiate the diet than we were a year ago.

Back to the neurologist and the Ritalin. This neurologist, who shall remain nameless, held the position that ALL children with behavioral problems can benefit from medication.

Do I believe that? Should I believe that?

This is one of the dilemmas we parents of ASD children face. Who do we believe? What do we believe?

Today, I consulted with David's teacher and the behaviorist who was added to the team. The behaviorist told us that behaviors can be changed with training and medication is not needed solely to alter behavior.

Do I believe that? Should I believe that?

More uncertainty.

So we are taking the safest course. Diet,behavior modification, and dietary supplementation.

Since David was so ill last week, I was able to get a lot of reading in. Mostly while David was clinging to me, coughing on me, or vomiting down my t-shirt. I told you all I was Ninja Mom didn't I?

I was able to read Jenny McCarthy's Mother Warriors. In this book she speaks about biomedical intervention and how children have "recovered"

Do I believe that? Should I believe that?

The thoughts just go around and around. I want to do everything that I can to help my son. We all do. How do we know what is right? Whom do we trust?

We hear the stories all the time.

My child didn't speak until we gave him X. Within days of starting X he looked me in the eye and said I love you for the first time ever! He also told me never to make him eat bologna again because he hates it but he really enjoys kiwi!

I so want that. I so want an X to recover my son. Recover isn't even the right word with David because recover implies to be brought back from something. David has always been "there" He has never been outside of "there" So does that mean, for kids like David, that there is no way to make him whole? Is he not considered whole because this is where he's always been and who he has always been? Maybe for kids like David we should hope to have him defragmented.

I don't know. I don't even know if I'm making sense right now.

The entire biomedical intervention issue has really caused me to think.

How do we know which interventions are appropriate for an individual? Would a child like David, who was born with Autism benefit from the same interventions as a child whose autism was caused by vaccines? And what about those whose autism was caused by an environmental factor? And what about those who are can't stand to be touched or can't tolerate sounds? What about that?

See how this goes? Since we don't know what caused Autism absolutely, how do we know absolutely which intervention is appropriate?

That's why it's 1:34 am and I can't sleep.

1 comment:

Hummingbirder said...

You're absolutely right and so many of us moms are in the same place. What is the answer for our child? What will help him or her? God help us us and give us the wisdom we need.
My son is 3 and was dx's with PDD-NOS last June. The whole special diet seems near impossible to stick with much less afford. My son is the youngest child of 6.
Deanna